This Is MS Multiple Sclerosis Knowledge & Support Community

Posted: **Fri Sep 17, 2010 6:31 am**

NZer1 wrote:Me again or still as the case may be.
I have recently been following the work of Dr. Flanagan aka the uprightdoctor. Dr.s can you please have a look at his web pages he is well versed in CCSVI and the works of Dr. Shelling and has some very valueable input that would help IR's and anyone for that matter who is involved with MS.
I see that Cheerleader (Joan Beal) has made contact and Costumenational has a very good dialogue with Dr. Flanagan about his situation and CCSVI.
http://uprightdoctor.wordpress.com/about-ccsvi/
There is more on the Dr.'s web site that needs looking at also, please have a read!
http://uprightdoctor.wordpress.com/ccsv ... odynamics/
Regards Nigel

i reviewed it.
i would rather not comment

Posted: **Fri Sep 17, 2010 6:32 am**

joana123 wrote:Dear dr. S,

only few words, please.

Best regards,
A.

few
fewtile
fewton
fewer
fewest
fewtball

Posted: **Fri Sep 17, 2010 6:35 am**

drsclafani wrote:
NZer1 wrote:Welcome Dr. have to say I was a bit worried you seemed to be gone for some time, thought someone may have hijacked you and put you in a sweat shop treating PwMS 24/7.
i could live with that. I like steam rooms and would love to treat patients ASAP!!

No need to sedate your patients if you follow through on this plan, the heat will do that for ya!

drsclafani wrote:SIR is convening a group to establish foci for research and recommendations for training. I have been invited to attend, mid October.

As your partner in crime: please give me some of the things that you want assessed and researched. i will share during the meeting

This is a remarkable offer.

Posted: **Fri Sep 17, 2010 6:40 am**

nanobot wrote:Dr. Sclafani:
Could you please give us an update on the "cutting balloon" use for venoplasty since your first use in March when it was like "butta". Is there a higher risk of thrombus and should more follow-up be given to check by ultrasound when it is used? Dr. Gary Siskin did discuss this in his lecture at the SUNY conference Aug. 2010. There is no published guidance for the use of this device in veins with MS disease and I would like to hear about development of a standard for using the cutting balloon. Veins can be much weaker than arteries are they not? Dissection is a risk with venoplasty, and what benefits does the cutting balloon have? Very few have been proven in cardiac artery uses. Please help. This is becoming a hot trend on the west coast. Thanks....

the cutting balloon "scores" the lining of the vein and also increases the forcefullness of the balloon dilatation. it basically results in a higher pressure effect on the balloon.
i used it because the stiff valves were so difficult to distend. with a standard balloon. i used it as a precursor to larger balloon dilatation.

alas, there are no standards at all, biggest problem we have in evaluating liberation. i hope that those using devices will report their experience as some point. but without an irb oversite, they cannot

dissection of veins is a rare condition, perforation is more common. dissection is a tear in the wall with blood dissecting the layers of the blood vessel. it is not seen often in veins, only arteries, where intimal dissections are more common during angioplasty

Posted: **Fri Sep 17, 2010 6:43 am**

Opera wrote:Dear Dr Scaflani,

I do hope you had an interesting holiday in China.

I have been going through the information you were kind enough to share with the MS Community with regard to CCSVI and more specifically restenosis. However, I have not been able to find an answer to my current problem with regard to restenosis shifting from place to place.

I had a Doppler Ultrasound in March this year which showed bilateral mid internal jugular stenosis. However, no reflux was detected presumably because the Sonographer was very new to the concept of CCSVI.

An angioplasty/venogram was done in May which showed evidence of stenotic change at the valves on both sides. Both valves were balloon dilated to 12mm. The azygos was found to be normal with pressure in the distal azygos at 12mm, in the middle azygous vein at 12mm and in the superior azygos vein at 9mm.

There was some improvement in fatigue which disappeared within 7 days.

A second Doppler examination a month after the procedure showed “unaltered stenosis” of both jugular veins. However, there was an improvement in the flow of both jugulars. Reflux was detected in both veins. A second angioplasty/venogram was performed. In the RIJV the stenosis was found to be in the upper portion of the RIJV with no stenosis at the valve. This was ballooned to 12mm and there was good flow with significant reduction in collateral venous return. In the LIJV there was mild stenosis at the valve which was ballooned with improvement in venous flow.

However, there was no impact on my symptoms. A third Doppler ultrasound was performed one month later. There was reflux only in the LIJV which had a CSA of 0.4cm2 and a venous flow recorded at 208 ml/m in the supine position. There was stenosis of the RIJV but venous flow was recorded at 618 ml/m in the supine position. An MRV was performed a few weeks later which confirmed that there was no stenosis in the LIJV. However, there was stenosis in the proximal RIJV from C1 to C4. There was filling of the collateral venous return via asymmetric intraspinal epidural venous plexus along the right.

You had mentioned that upper IJV stenosis may be transient and may be the result of problems lower down the jugulars.

However, I am nervous to undergo angioplasty/venogram for a third time because the restenosis keeps shifting from place to place. I am worried that the next time round the restenosis may spread to the transverse and sigmoid sinus. Are my fears justified? I greatly appreciate any feedback you can give me based on you experience.

i am unable to answer your question in this case, it is far too complicated to render an opinion without all the images

i still doubt that upper jugular stenosis is common, certainly if it wasnt there before, it is unlikely to be a real stenosis

Posted: **Fri Sep 17, 2010 6:44 am**

drsclafani wrote:
joana123 wrote:Dear dr. S,

only few words, please.

Best regards,
A.
few
fewtile
fewton
fewer
fewest
fewtball

I suppose joana123 was referring to the following post:
http://www.thisisms.com/ftopicp-132598-.html#132598

Posted: **Fri Sep 17, 2010 6:48 am**

Frank wrote:Dear Dr. Sclafani,

I had my CCSVI examination (only MRV) appointment with Prof. Vogl. According to the findings I have collateral networks on both sides. My rIJV shows some stenosis about 20%. My lIJV is hypoplastic (about 3-4mm diameter). Some retrograd flow has been detected.

Prof Vogl told me he would be able to dilate the hypoplastic lIJV. I have read some posts about hypoplastic lumbar veins which are said to be inoperable at the moment.

How do you consider the chances of a successful surgery/dilatation for hypoplastic IJV? How would you estimate the risk of restonsis i such a case - especially high, especially low, quite the same as in other cases of "regular" stenosis.

Thanks!
--Frank

the degree of stenosis that is significant is unclear. certainly in high flow low pressure systems like the jugular vein, stenoses that would not be considered significant in an artery, can be significant in a vein. 20% ????. I might treat. not sure.

hypoplastic jugular veins can be dliated sometimes need stents, sometimes occlude after angioplasty. i have never treated one but have had cases shared with me of success and failure

Posted: **Fri Sep 17, 2010 6:50 am**

Thekla wrote:Dear Dr Sclafani,
I was also tested (mrv only) and based on the findings treated by Dr Vogl in August. LIJV, 40% and RIJV, 10% blocked very high, the azygous was judged to be in order but was also run through quickly after the ballooning to 'be sure'. I experienced immediate lack of fatigue and improved mental clarity (which I hadn't been aware that I was lacking) There was initially improved muscle strength in the legs and much better bladder symptoms which quickly faded.

I am wondering whether, considering Dr Tariq's experiences with azygous irregularities, if azygous problems might be being missed, particularly when only a mrv is done for diagnosis. I think there would be no identification of flow disturbances, if I understand correctly. Perhaps, flow disturbances are also being discounted since some blood is getting through anyway.

Can you please comment?

There is NO evidence that MRV correlates with CCSVI. I have seen excellent MRV by Dr Haacke that are starting to show nicely the anatomical problems of the veins but some of these findings are not seen by MRV, nor by catheter only by IVUS or compliant balloon inflation testing as described by tariq sinan.

i think that these azygos webs are a great challenge.

Posted: **Fri Sep 17, 2010 6:55 am**

Donnchadh wrote:
drsclafani wrote:
snip

Scar tissue or atherosclerosis causes stenosis of arteries and dialysis grafts.

snip

Some follow-up questions concerning scar tissue in veins and a resulting stenosis.

Would the IVUS be able to visualize venous scar tissue in a
stenosis? Can scar tissue be visualized in a stenosis without it?
Can a stenosis be caused by physical injury to a vein?

I have been shown cases of radiation injury and trauma that have been associated with ccsvi in patients with MS symptoms and brain lesions.

A number of fellow progressive MSer's have reported to me that they had prior neck/head/chest trauma before the onset of their "MS" symptoms. There seems to be a direct correlation between the severity of the trauma and the timing of emergence, type, pace of symptoms. All reported having no neurological problems prior to their trauma incident.

I suspect that the vast majority of CCSVI cases have a congenital origin, but a small percentage are due to vein injury and resulting scar formation.

Donnchadh

but it is unclear to me whether this is coincidental or causative. patients with MS do get injured too
nonetheless, it is an important observation to study.

Posted: **Fri Sep 17, 2010 7:01 am**

Sotiris wrote:
drsclafani wrote:
joana123 wrote:Dear dr. S,

only few words, please.

Best regards,
A.
few
fewtile
fewton
fewer
fewest
fewtball
I suppose joana123 was referring to the following post:
http://www.thisisms.com/ftopicp-132598-.html#132598

i did comment. that this patient had some improvements initially is encouraging. i just do not want to give too much hope based upon some initial improvemens in a ppms patient. time will tell whether the patients improvements are lasting. i hope they only get better but we just do not have enough evidence of the nature progression of ppms yet

Posted: **Fri Sep 17, 2010 7:02 am**

i think i am caught up

have a little mercy, i have got to go to work
i am working on some exciting things right now

Posted: **Fri Sep 17, 2010 10:09 am**

drsclafani wrote:
girlgeek33 wrote:Can you tell me how common it is to get scar tissue around or near the incision site? When there, what can be done about it? When is this serious? Can this create issues for the blood flow, especially since that's what trying to be corrected?

Thanks! Welcome back! Hope it was a good trip!

scar forms whenever there is disruption of tissue and skin. if you have a long cut, scar will form. how intense, thick, wide the scar becomes is highly variable, as you probably already know.

many IRs make a cut in skin from 2-3 mm to 10mm long. if the edges do not come together, the defect is filled with scar tissue. if the puncture site were to get infected, then the scar might be larger. Some people produce very thick hypertrophied scars called keloids.

I do not make a skin incision. I just put the needle through the skin and then put a wire into the vein and push the catheter over it into the vein without cutting the skin. my argument is that the cut is unnecessary and the likelihood of scar is much lower. it is basically like putting in an IV

nothing wrong with either technique. the cutting is the traditional way. no one ever accused me of being traditional.

however the scar is usually trivial, it is unlikely to cause problems for the veins

thank you but I guess I should have been more specific. I have what feels like scar tissue under the skin. feels like a little ball, solid, inside, maybe a half inch above incision site. So, considering that, do I have anything to be concerned with? I had a serious bruise after the procedure. I recall a nurse noting that something must have "slipped" but it is a vague memory. After the bruise started to heal, and I could touch the area without pain, I felt the "ball" inside. it was larger than it is now. initially, maybe the size of a small grape. now about the size of a pea. My doc seems to think it shouldn't be a problem. Since I can't find too much information about this, I wanted to ask for more clarification. To be clear, my actual incision site has been fine. It healed nicely, never bothered me.

Thanks!!!!

Posted: **Fri Sep 17, 2010 10:54 am**

There was one more that got lost somewhere Dr,
A friend has asked me to ask;
"Why do sonographers look at the internal jugulars only? And why do the IRs look at the internal jugulars and azygos veins only? There are so many veins that drain blood from the cranium and the CSF around the spinal cord. Why do they restrict themselves? "

Posted: **Fri Sep 17, 2010 11:07 am**

Dr. S - Thanks for coming back to us. I haven't yet figured out how to use the "quote" function. I related my case to you on page 210 of this thread and you responded on 211. You said:

"...that being said and showing lesions after the spinal crush and surgery may indeed represent the etiology of the outflow obstructions. it will be very interesting to see your MRV and angiogram when you have it done. would you share?

in the meantime, get an ultrasound and go from there."

Just wanted to update you. The ultrasound showed stenosis and reflux both standing and supine, meeting 3 of the Zamboni protocols. The note on the report says my right ICV is wrapped around my carotid artery at the point of the surgery and the course of the vein is abnormal. The rIJV valves are abnormal bilaterally. Dr. Jacob initially felt I might be better served seeing a vascular surgeon to unwrap it. I saw two different surgeons who scoffed at the notion of the necessity of unwrapping it. They both contended that it is standard practice in some cases to completely tie off a jugular and they have never seen that cause any problems.

Next week I will be seeing an IR who has reviewed my case and feels a balloon or a stent would unravel the vein. I will keep you posted if you'd like. And of course I will share all the pictures and reports with you. How would you like them delivered? I can make a copy and mail them or try to figure out a way to send them electronically. The ultrasound pictures are a really big file. You can see some of the stills at:
http://www.facebook.com/album.php?aid=9 ... 1548320287

I'll post back next week after the IR visit.

Posted: **Fri Sep 17, 2010 11:20 am**

NZer1 wrote:There was one more that got lost somewhere Dr,
A friend has asked me to ask;
"Why do sonographers look at the internal jugulars only? And why do the IRs look at the internal jugulars and azygos veins only? There are so many veins that drain blood from the cranium and the CSF around the spinal cord. Why do they restrict themselves? "

relevant?

drsclafani wrote:
mshusband wrote:Dr. Sclafani ... what role do you suspect the inferior vena cava could play in issues in the legs?
i do not think that the inferior vena cava plays a role in ccsvi unless the usualy suspected veins are involved. Then alterations of flow within other structures can make it worse.

Could a blockage there cause the real issues in the spinal area? Since an obstruction therein would cause more blood to flow through the lumbar veins and the azygous/hemi-azygous? Wouldn't the added pressure on those veins likley cause more issues?
a blockage in these other veins may make ccsvi worse, but i do not think that they will inddependently cause ccsvi.

and remember this is not about pressure. it is about flow volume

Are there any veins that you can't get into? If no ... why not just check all the critical veins?
there are very few veins. but there are hundreds of them so where do we stop. ACtually i think the full ferrara protocol is pretty inclusive...

drsclafani on March 22 wrote:
why should only two type of veins (jugular and azygos) be affected in CCSVI? - very likely more other veins will be stenosed, just that we do not know as protocols not worked out for those yet.
zeureka
one sees only what one is prepared to see.
looking in the periphery beyond those big large rivers, there are small lakes and tributaries and suprise surprise there are abnormalities of the small vessels that look like the bigger problems only smaller

the body is a beatiful thing, but when it decides to go haywire, it really knows how to mess up

drsclafani wrote:
Second how many veins drain the poetic brain? I have heard of internal jugulars, external jugulars, and vertebrals, as well as a lot of collaterals. I count 6.
1I:
actually there are four, the externals do not contribute very much except in obstruction. there are also venous plexuses that provide drainage but they also cause problems

This Is MS Multiple Sclerosis Knowledge & Support Community

DrSclafani answers some questions

Re: Dr. Sclafani: current view on cutting ballons

Re: Restenosis